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PULMONARY FIBROSIS FOUNDATION CARE CENTER NETWORK ADDS 19 NEW SITES
Network grows to 40 across the U.S., continuing multidisciplinary care for people with pulmonary fibrosis
CHICAGO, December 1, 2015 – The Pulmonary Fibrosis Foundation (PFF) today announced the expansion of the PFF Care Center Network with the selection of 19 additional sites, bringing the total number to 40 in 27 states. Launched in 2013, the PFF Care Center Network is comprised of leading medical centers with specific expertise in treating pulmonary fibrosis (PF), a devastating and relentlessly progressive group of lung disorders that causes scarring in the lungs and are often difficult to diagnose and manage, with survival rates of less than five years following diagnosis.
“As the leading resource for the pulmonary fibrosis community, the Pulmonary Fibrosis Foundation created the PFF Care Center Network to help ensure patients receive a swift and accurate diagnosis along with the highest quality of care, which is absolutely critical for effectively managing the devastating group of fibrotic lung diseases,” said Gregory P. Cosgrove, M.D., chief medical officer of the PFF. “Over the past two years, the PFF Care Center Network has nearly doubled in size and has taken the brilliance and efforts of many to help the PF community and make a significant contribution to the advancement in patient care.”
The PFF Care Center Network advances care by fostering a multidisciplinary approach to deliver comprehensive patient care, forming specialized care teams comprised of experts working together to care for patients. This approach is critical to managing a complex disease like PF and ensuring people with PF receive an accurate diagnosis, obtain quality clinical care, and acquire important support services. A full list of PFF Care Center Network locations is located here.
As part of the selection process, a panel of peer reviewers, comprised of current members of the PFF Board of Directors, Medical Advisory Board, PFF Care Center Network and PFF Patient Registry Steering Committee, reviewed and scored applications.
The institutions newly certified as PFF Care Center Network sites include:
- Boston-Providence Pulmonary Fibrosis Care Centers (Beth Israel-Deaconess Medical Center, Massachusetts General Hospital, Rhode Island Hospital, St. Elizabeth’s Medical Center)
- Dignity Health St. Joseph’s Hospital & Medical Center
- Duke University Medical Center
- Johns Hopkins and the University of Maryland Medical Center
- Northwestern Memorial Hospital
- The Ohio State University Wexner Medical Center
- Penn State Milton S. Hershey Medical Center
- Stanford Health Center
- Stony Brook University Hospital
- Temple University Hospital
- UCLA Health Interstitial Lung Disease Program
- University of Cincinnati Medical Center
- University of Minnesota Medical Center
- University of Rochester Medical Center
- The University of Texas Health Science Center at Houston (UT Health)
- The University of Texas Health Science Center at San Antonio
- University of Texas Southwestern Medical Center
- University of Utah Health Care
- UVA Health Systems
“With this expansion, we are pleased to build upon the success and positive reception that the PFF Care Center Network has received thus far within the PF community,” said Kevin Flaherty, M.D., M.S., chairman of the Steering Committee of the PFF Care Center Network. “All the participating sites exemplify the program’s emphasis on providing excellent patient care, educating staff about pulmonary fibrosis and pursuing research. In the near future, all the sites will have the opportunity to apply to participate in the soon-to-be-launched national PFF Patient Registry, which will collect patient data to facilitate ongoing research.”
The PFF recently selected the Statistical Analysis of Biomedical and Educational Research Group (SABER) unit of the Department of Biostatistics at the University of Michigan’s School of Public Health to serve as the Data Coordinating Center for the PFF Registry. SABER offers an experienced staff of approximately 30 individuals specializing in clinical monitoring, statistical analysis, data entry and management and research administration. SABER will provide the secure infrastructure necessary to manage the enrollment and collection of data and samples for the PFF Registry over time.
About Idiopathic Pulmonary Fibrosis
Idiopathic pulmonary fibrosis (IPF) is a condition in which, over a period of time, lung tissue becomes thickened, stiff and scarred. The development of the scar tissue is called fibrosis. As the lung tissue becomes scarred and grows thicker, the lungs lose their ability to transfer oxygen into the bloodstream. As a result, the brain and other organs don’t receive enough oxygen. In some cases, doctors can determine the cause of the fibrosis, but in many cases, there is no known cause. When the cause of the fibrosis is unknown (and certain pathologic or radiographic criteria are met), the disease is called idiopathic pulmonary fibrosis or IPF. There is no cure for IPF. Presently, there are two FDA-approved treatments for IPF in the U.S.
About the Pulmonary Fibrosis Foundation
The mission of the Pulmonary Fibrosis Foundation (PFF) is to serve as the trusted resource for the pulmonary fibrosis (PF) community by raising awareness, providing disease education, advancing care and funding research. The PFF collaborates with physicians, organizations, people with PF and caregivers worldwide. The Pulmonary Fibrosis Foundation has a four-star rating from Charity Navigator and is a Better Business Bureau accredited charity. The PFF Summit 2017: From Bench to Bedside, its fourth biennial international health care conference, will be held November 9-11, 2017. For more information visit www.pulmonaryfibrosis.org or call 844.TalkPFF (844.825.5733) or +1 312.587.9272 from outside of the U.S.
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